Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Wondering If I Have Celiac?


ssMarilyn

Recommended Posts

ssMarilyn Newbie
I've studied up on this alot and know that the tests done at the clinic aren't always 100% and you can get a false positive. I stopped all gluten, but am still experiencing the discomfort in my abdomen area. Sometimes bloat, gas and I also have fatigue, which is no doubt part of my hypothyroidism, which my MD/DO and I are working on. Can one part of the intestinal area feel worse than another? On occasion I get an aching sensation in my lower right abdomen. It goes away for awhile, then comes back. Feels like the way I used to get before I would get my period. I had a partial-hyst years ago, so no longer have that to deal with. I would think that if this was a appendix issue it would not go away?

I've also read that if you do have celiac, it can take some people years to get better after they have stopped all gluten? Any insight?

______________


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Yes, it can take one to here years depending on the severity of intestinal damage and damage to other parts of your body (e.g. Bone loss). It is shame that you have not been tested. Any doctor can order a celiac blood panel. Out-of-pocket costs are $450 which may be a small price to pay compared to giving up gluten and finding out that gluten was not the issue. I should know, I was formally diagnosed and my husband was not. He has been gluten-free for thirteen years. In retrospect, he wishes he had a diagnosis.

In any case, I wish you well.

mommy2emma2003 Newbie

Ty cyclinglady my dr thinks its all in my head ....I have thought about buying the test that you can do over the

Counter and if it comes up positive tell now you need to do a full celiac disease test

cyclinglady Grand Master

It is NOT in your head!

How long have you been gluten free? You have to have been eating it for a few months to get an accurate result on the antibody tests for celiac disease.

ssMarilyn Newbie

Thank you so much! I just called and have an appt with my MD on Tues to get tested!

nvsmom Community Regular

You need to start eating gluten again immediately or it could affect your test results.  An accurate blood test requires around 8-12 weeks of gluten consumption, if you were previously gluten-free for quite a while, in the weeks prior to testing.  If you were only gluten-free a week or so you might be fine, but if it was longer, I would not test immediately.

 

And yes, stomach pain  can come back even if you are eating safely.  I've been sick this week and had too many cough drops, and then I made the mistake of having some coffee before eating anything - I've been almost doubled over for a good 20 minutes now.  :rolleyes: We can still have other foods bother us, or just an "off" week.

 

Best wishes.

ssMarilyn Newbie

I knew I would have to start eating gluten again. I figured I'd have a slice of toast every day. That just leaves me 4 days to eat gluten. My stomach is okay, it's my abdomen/intestines that scream at me!! If the test result comes back negative, I'll just wait a few weeks and do it again... also with eating toast every day.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

I knew I would have to start eating gluten again. I figured I'd have a slice of toast every day. That just leaves me 4 days to eat gluten. My stomach is okay, it's my abdomen/intestines that scream at me!! If the test result comes back negative, I'll just wait a few weeks and do it again... also with eating toast every day.

Just an FYI - your insurance probably won't pay for the same test twice in a couple of months. You might want to wait a while for the blood test.

Open Original Shared Link

cyclinglady Grand Master

How long have you been gluten free exactly?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,213
    • Most Online (within 30 mins)
      7,748

    MogwaiStripe
    Newest Member
    MogwaiStripe
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.